Thursday, October 30, 2008

Annoyed Beyond Belief

The search for answers continues. So does my frustration with the medical system. My RNase L panel came back. This was supposed to be the definitive test that my doctor was going to use in determining whether or not I would start Valcyte.

There's two parts to the test. One was normal. The other was a little elevated. I have no idea what it means but it certainly doesn't show an active viral infection. It shows my immune system is dysregulated. It turns out my doctor also wanted an elastase test done too but his office screwed it up so it wasn't done.

I got results back from bloodwork ordered by my insurance doctor. Blood glucose was at 95 (99 is high). My white blood cell count continues to climb and is just below high. IgG EBV was 1600 +. Normal is less than 100. The lab ran the wrong tests so 2 important tests weren't done: HHV-6 and chlamydia pneumonia.

There might be a mold problem. We found mold behind a layer of some plaster type thing that was started to peel underneath the window in the bedroom. That plus the high mold count in the petri dishes could indicate a mold problem. Given that I have the multi susceptible genotype it could mean I have mold poisoning. With this genoty pe my body doesn't recognize the presence of mold toxins so they just continue to build up in my system eventually wreaking havoc with my immunce system.

I've about had it with my CFS doctor. I'm tired of him ordering 1 or 2 tests each month. I want aggressive testing. I'm looking for another CFS doctor here in the area. Hopefully one covered by insurance. I'm less than impressed with my doctor. Or maybe he's just someone to be angry at right now.

I just can't believe with all the tests I've had that, although there are clear abnormalities, still no direction in treatment.

I sent away a sample of the mold to be analyzed by a lab. Hopefully that will come back soon.

I'm sick of doctor's, medical tests, uncertainty, and sick of this damn illness. Something is really wrong and they can't find out what it is. So I'm back to searching online myself for answers.

Or maybe I just will get a medical marijuana card and medicate myself. I've been considering it. This whole mess is just getting old. At least I could have a few good laughs.

4 comments:

"Im sick of DRS, etc...." I have been there, CFS Warrior...many times over the past 24 yrs. I quit going to drs for many years b/f trying again and finding the right one. Theya re so few and far between.I wanted to let you know that I have awarded you the Kreativ Blogger Award that you can read about at my blog if you wish. I was given it by another blogger and asked to share it with others. You encourage and inspire me with your honesty and willingness to share yourself here.Thank you for your support too.Renee

Three words: start the Valcyte. It sounds as if your viral tests meet the criteria that Montoya would use. And some other, lesser antivirals can lessen the impact of Valcyte if you take them first. You feel like crap -- you might as well use the big gun. And although the potential side effects are serious, they occurred with a test group that was even sicker than you and more vulnerable to organ damage. Take the Valcyte -- and be sure you take it long enough. If you're taking antibiotics, I'd give them 12 - 18 months. And if none of that works, look into interferon treatments. My story is very similar to your own. And I'm sure we've done much of the same (exhaustive) research. I'm convinced this illness is largely co-infections, and I'm going after them. I've been scrupulous in getting the right tests, having them analyzed by the right labs (e.g. Focus), and I have a kickass specialist at the top of the field. Unfortunately, however, these bugs are stealthy, so you don't tend to get irrefutable evidence from the labs/testing. You can get enough data points, however, to paint a picture -- and I strongly believe that the picture is stealth co-infections.

Everyone's situation is different, and people have more or less tolerance for this illness. I've lost 5 years of my life and most of what's important to me, so I'm in a take-no-prisoners mode. It sounds as if you might be at a similar point, so I'd encourage you to rethink the risk/reward equation and consider the Valcyte sooner than later.

This is my first time commenting on a blog. I hope I haven't done any harm. Good luck -- and let us know how you're doing.

Thank you for your comment. It's actually really helpful to have someone just be direct. Yes-I too have done exhaustive research. I'd love to exchange information. Have you decided on Valcyte? I think I've been looking for irrefutable evidence.

You have done no harm in commenting on a blog. The opposite, in fact. Feel free to comment any time. Thank you.

About Me

I first became ill in July of 2007. Or at least that's when I started having symptoms that I couldn’t explain away with being too busy, too stressed, not eating enough, not getting enough rest, etc.
In August I passed out while eating in a restaurant. In September I remember climbing some stairs while visiting a museum in SF and feeling a sense of profound fatigue. As I climbed the stairs I thought to myself "it's as if my cells aren't getting enough oxygen"and for a minute worried I might have some sort of leukemia. During lunch I literally had to put my head down to sleep.
By the end of December of 2007 I was housebound due to dizziness, fatigue, cognitive impairment and a myriad of other symptoms.
I'd completed my dissertation in 2006 and awarded my PhD in Jan 07. I'd always been active, athletic, driven.
Imagine my surprise when this all happened. It's been a life changer.
This illness is not for the faint of heart. 20% of people with cfids commit suicide. It's a fact. The illness is that devastating. I used to believe that cancer was the worst thing one could have. I no longer believe that.
Luckily I plan on getting as well as I can with the right help